Tapering advice please.

[Countrykitten]

Brief recap on me. In June this I year had 120mg Depo-medrone injection (for PMR), which was little short of miraculous, from private Rheumy who then wrote to my GP asking her to continue these on NHS. You bang your head against a brick wall at our surgery but I finally had another injection in September, which didn't work as well and was administered by a Paramedic who only really gives joint injections. I saw him again six weeks later to try to find out how I go about getting a proper treatment plan, tapering etc. Nobody seems interested in helping me. There is no record of what injections I've had from Paramedic on my notes. Four weeks ago I eventually managed to get through to the surgery and had a call from an anonymous Dr who said he was sending me oral pred plus something to protect my stomach, and let them know how I get on. I cannot tolerate Lansoprazole, this should be in my notes which obviously noone reads. I did try so I couldn't be blamed for not cooperating, but I have been really ill ever since with badly swollen stomach, severe pain and explosive diarrhoea. Back to arguing with surgery, no Drs available, and I can't speak to Pharamacist etc....In the end I pointed out that you can't just give someone steroids then abandon them. they got me an appointment with a different practice in the next town where I saw a lovely Doctor who agreed I should come of oral pred and back on injections but, of course, we can't rush the process. I've only been on them just four weeks at 30mg a day. He initially suggested coming down 5mg a day every three weeks but then said every four would be safer. I was wondering whether I could reduce to 5mg for three weeks, then a week of alternating 5&4, then three weeks on 4 etc. Has anyone tried this? I know I have to be patient but I'm due to have gallbladder removed by end of February and I don't want to go into that feeling as ill as I do at the moment.I've ditched the Lansoprazole and he has given me 20mg Omeprazole although I told him I've been trying 10mg Omeprazole and even they cause painful bloating. Has anyone had stomach bleeding from not taking PPI? I'm also Hypothyroid which I know often causes low stomach acid. How can we digest our food if our digestive acid is removed? I think I've heard people suggest Cider Vinegar???

I'm already very limited with what I can eat because of gallstones, now I'm afraid to eat anything but get bad stomach pain if I get hungry.....can't win.

Sorry this is so long and rambling, but you fellow sufferers are the only ones who understand. I am so grateful for this forum, I don't feel quite so abandoned! Thank you.

[SnazzyD]

oh my, what a mess. I’m sure this chopping and changing dosages, types and methods of administration is doing you no favours. The problem I have with injections is that the current service is not responsive enough for you to be safely monitored and treated. Oral therapy is so much more manageable. What I don’t understand is if you are having large boluses of steroid every so often, how do you fine tune reductions to find the best *lowest* dose for you? Does the doctor have a reduction plan and a system in place such that you are not left steroid less if their service can’t give it to you in time?

On the dosing, 30mg is on the high side for PMR but your talking about taking 5&4mg sounds way too fast to be at so soon. Or am I getting mixed up with reducing to and reducing by??

How are your symptoms in all this?

Did you want to go on the injection again because oral is appearing to require Lanzoprazole and it’s relatives (PPI’s)? Why hasn’t the doctor tried the other family of drugs that work on histamine receptors such as Famotidine? I couldn’t tolerate PPI’s either. Or, even coated Pred? This is what I needed to avoid anti acid meds while having a very sore stomach.

[PMRpro Ambassador in reply to SnazzyD]

See my links for how to use depot-medrone i.m. injections.

[SnazzyD in reply to PMRpro]

Where do I go?

[PMRpro Ambassador in reply to SnazzyD]

4 replies down the page ...

[SnazzyD in reply to PMRpro]

oh I see! 😆

[BethCH]

Hi, this is a lot to go through, stress levels must be high, which impacts on tummy. I have no expertise as far as tapering I am afraid, however, I did have gallstones (loads) and subsequent gall bladder removal. I sympathise with you, the pain is horrendous. I went on the gallbladder diet as per nhs while waiting for my op, ate little and often plus used one of the azoles. More recent years I developed gastritis and duodenitis, took a while to sort out but is now controlled by 60mg famotidine (down from 80) and I have removed every trigger from my diet, so I am great fun to invite to dinner parties!🤣. I had a cast iron stomach prior to gallbladder issues, although my diet is much healthier now as a result. My GP also prescribed sucralfate which was brilliant for those times when the famotidine was not enough. It coats the stomach and you take it daily. I think the meds are regarded as ‘old fashioned’ by medical profession compared to PPIs but they work for me. Both these meds will impact on thyroid meds (malabsorption) so timing and medical advice is imperative.

I hope this helps, and wishing for positive outcomes for you. 🤞🏼

[piglette]

Could you be prescribed enteric coated steroids instead? This would mean you could drop the PPI?

[superses in reply to piglette]

Enteric coating does not bring any benefic as the of prednisolone is to inhibit prostaglandins through thre blood stream and not direct action on the stomach so enteric coating does not work,In fact they can reduce the bioavailability or the drug which may account for side effects being noticed on changing between formulations

panmerseyapc.nhs.uk/media/1...

[PMRpro Ambassador in reply to superses]

Beg to differ - they do work, they work very well for many people. And that is from real life, empirical trials. You can even use them for a delayed effect by taking them before bed so they are working nicely by the time the inflammatory substances get to work in the early morning.

For some people they mean that pred can be used where plain pred causes severe gastric effects -  SnazzyD can tell you about that if I remember rightly.

Bioavailability is less of a problem since pred dose is titrated anyway to find the best dose for a particular patient.

[superses in reply to PMRpro]

"Note: the use of enteric-coated formulations of corticosteroid is not recommended for reducing the risk of gastrointestinal bleeding or dyspepsia" NICE June 2020

cks.nice.org.uk/topics/cort...

Note in my original answer that the gastric coating reduces biovailability. Changing to uncoated increases bioavailability and may account forincrease gastrointestinal side effects when changing formulations

Please quote sources for dosing at night.

[PMRpro Ambassador in reply to superses]

Sorry - can't give sources, as I said, empirical evidence. Prof Sarah Mackie in Leeds and I discussed it some time ago and she told me there was a proposal for a study comparing Lodotra/Rayos delayed release prednisone with enteric coated prednisolone and the company who produce Lodotra wouldn't play ball. Which we suspect means they know the results would be similar and enteric coated pred is a far cheaper way of achieving good control of morning symptoms. It is known that the ideal time for taking plain non-coated prednisone for optimal morning symptom control is 2am. Since enteric coated pred takes approximately 4 to 5 hours at least to get into the system, if it is taken at 10pm it will do much the same. The timing for taking medication is rarely written in stone.

ard.bmj.com/content/56/1/27

[piglette in reply to superses]

Like PMRPro I am afraid I disagree with you. I have taken coated steroids all along and they have worked very well indeed. Where did you get the information that you quoted?

[HeronNS]

You're in the UK where, uniquely, coated pred is available. If you do need stomach protection surely coated pred would be sufficient? It seems to be a solution for many. Can't give you further advice as we don't have coated pred here, and personally I now manage my tiny dose with about 1/3 cup of plain yoghurt. Formerly I took it at breakfast time and food was all the protection I needed (15 mg maximum to start). But the suggstion to try other stomach protection should have been obvious to any doctor, unless you've already tried these in the past and not found these useful. Hope you find a solution soon because it's awful having to suffer because of medical inadequacies. Good Luck! 🍀

[PMRpro Ambassador]

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/956...

The "how to" by the guy who started it, Baskhar Dasgupta.

It only works when the injections are administered properly according the right intervals. And given the mess GP practice is in at present...

If you have only been on pred, even 30mg, for 4 weeks you can reduce quickly down to about 10mg - it will be a bit uncomfortable possibly but not dangerous. Then you get the injection and keep reducing the oral pred quite quickly under the cover of the depot injection.

I have never taken a PPI - ever. In over 13 years of oral pred. I have used famotidine when my rheumy wants to use high dose NSAIDs for a week or so for back spasms.

As mentioned - in the UK you also have the option of enteric coated pred which I used for a time. I found it excellent. It passes through the stomach to the lower GI tract before being broken down in the less acid environment. For the last 7 years or so I have taken a different form of coated pred which is designed to be delayed release but still in the stomach - np problems.

[Bridge31 in reply to PMRpro]

Do you not take a PPI because you agree with my daughter that they are really really bad for you ?

She is adamant about this and gets on her high horse every time it’s discussed . If they are so bad why do Doctors prescribe them so freely and frequently ?

[PMRpro Ambassador in reply to Bridge31]

I don't take a PPI because I have never needed them. They have their place and for some people they are very useful but I don't really like the idea of "just in case" medication.

There are cases where suppression of gastric acid production is required - and they do do that very effectively for many patients, probably slightly better than the H2 antagonists such as famotidine. Clever marketing told doctors they were FAR more effective than the "old-fashioned" H2 antagonists and it was believed. In fact, it is said they don't work for about a third of patients, cause intolerable adverse effects in a about a third - but do a good job for the other third! My husband practically went into orbit when put on them! But what doctors learn at a particular stage of their career tends to stick and once they get into the habit of doing something, it is hard to change. Here where I live, approval for reimbursement of drug costs is quite narrow - PPIs are covered, H2antagonists are not. If I want to use famotidine, I have to pay for it. That also influences what is used.

[moonieboy9358]

When I was decreasing oral steroids too fast. I had explosive diarrhea also. The doctors wanted me to drop by 5mg a week too. I ended up tapering at a much lower rate. I could only taper by 1/4 to 1/2 mg per week. It was so slow

[PMRpro Ambassador in reply to moonieboy9358]

As I just said to someone else - it isn't slow if it works!! You were still tapering at 1-2mg per month - and faster than that is often predictive of a flare.

[Countrykitten in reply to moonieboy9358]

I haven't even started tapering. I have always had a very sensitive stomach and it doesn't take much to make it flare up. I just want to get off oral pred.

[PMRpro Ambassador in reply to Countrykitten]

And what will you replace it with?

[Countrykitten in reply to PMRpro]

I shall go back to my private Rheumatologist for injections. I would prefer not to have to pay for everything, but I rarely go out, have enough clothes and eat very little so that's where my money goes!

[PMRpro Ambassador in reply to Countrykitten]

Actually - don't know how you feel about giving yourself injections but there was a lady on the forum some years ago who had to manage her GCA with i.m. injections because she had horrendous GI problems. Being timely with the jabs was essential with GCA and they were about to head off on their honeymoon so her rheumy taught her husband to do the jab. The only reason she didn't do her own was the difficulty of reaching the glutes!